New Study Highlights Mortality & Risk In Autism Wandering/Elopement

Portsmouth, RI – A new study released today by the National Autism Association (NAA) highlights the risk of injury and death related to missing persons with an Autism Spectrum Disorder (ASD), specifically those who wander or elope from safe environments.

The study, NAA Mortality & Risk in ASD Wandering/Elopement, found that nearly a third of reported ASD missing person cases related to wandering/elopement from 2011 to 2016 in the United States ended in death or required medical attention. The study was based on over 800 media-reported missing person cases in the U.S. over a six-year period involving individuals with an ASD.

According to the study, accidental drowning was responsible for over 70% of lethal outcomes, followed by fatal traffic injury. Injuries or trauma in the sample ranged from minor scrapes and bruises to non-fatal traffic injuries, near drownings, dehydration, and physical/sexual assaults post elopement.

Lori McIlwain of the National Autism Association says these findings likely underrepresent the issue of wandering/elopement and its associated risks. “It’s very likely these cases are happening at a much higher rate than what’s being reported.”

Even so, lethal outcomes occurred at a rate of about once a month on average in 2011 to about two to three times a month on average in 2015 and 2016. “What we’re seeing now is different from what was happening early on,” she says. However, she cautions it’s still too early to tell whether there is an increase in lethal cases, or if better reporting or other factors are playing a role.

Children 5 to 9 showed the highest number of deaths, while children under 5 faced the highest lethal risk with cases ending in death nearly 60% of the time. McIlwain noted that even though younger children faced more risk, the average age per year for lethal outcomes increased for most years of the sample period. “We are seeing more fatalities in teens and adults, so it’s important that all age groups and their caretakers have resource options for both prevention and response.”

A disproportionate risk was also seen among black individuals with ASD, as well as a higher lethal risk for females on the spectrum.

Individuals were under various types of supervision at the time of elopement with non-parent supervision accounting for 45% of cases. Times of transition, commotion and stress increased elopement risk, and those who were noted to be upset or agitated showed a higher risk of abruptly exiting into traffic or other high-threat situations.

Most individuals were found in or near water, traffic, at a stranger’s residence or in the woods. Low-sensory locations were also a common theme, according to McIlwain, such as abandoned areas and vehicles, cornfields, farms, tree nurseries, libraries and other typically quiet settings.

According to the report, cases touched on a variety of safety topics affecting the ASD population, including suicide ideation and self-harm, bullying, restraint, heightened stress response, and lack of proper services and supports. McIlwain says research, medical protocols and other programs are needed to address these issues, which may reduce exit-seeking behaviors in individuals with ASD.

NAA President Wendy Fournier says these findings underscore the need for widespread first responder training and resources, broader outreach, education and prevention tools for families, school staff, foster care providers and residential caretakers.

“In this six-year sample, incidents and deaths occurred in almost every state of the U.S.,” said Fournier. “Yet, most states do not have resources to properly prevent, or respond to, elopement behaviors in children and adults with autism.”

She also says the disproportionate risk among black individuals with ASD needs further study and guidance. “Black individuals with ASD and their families do not appear to be getting the proper supports to stay safe and protected, and this needs to change,” she said.